Meet The Boy

Posted on January 21, 2014 by simpleijustdo

In light of recent comments, I thought it might be time to do a post that re-introduces The Boy and his issues to this audience. The Boy was diagnosed with classic autism at the age of five. Although he has a fairly high IQ, and is a generally bright boy, he was not diagnosed with Asperger’s because he did have developmental delays, and was in speech and occupational therapy starting at the age of two. He has since “graduated” from OT, and now has speech therapy in the form of working on pragmatic social skills once a week with the speech therapist at school.

In his new school, the pilot program for which we switched schools has organizational periods for the kids on the spectrum at the beginning and end of the day. They meet with the autism teacher and aides who help them get organized for the day in the morning, and help them get organized before they head home. He also has a social skills class with his autism teacher. Ideally, he would be interacting with other 6th graders on the spectrum, but he is the only 6th grader in the program, currently, so they spend some time on social skills, and some time on homework and organizational skills during this period. He is also allowed to eat his lunch in his autism teacher’s room. This is his safe haven.

The Boy has issues with executive functioning, verbalizing his needs (as well as verbalizing anything having to do with school, like assignments and tests), and gets overwhelmed by his senses at times. He has issues with processing speed, and can get overwhelmed with assignments that require a lot of writing. He has the requisite deficits in social and organizational skills, as well.

Per his IEP, he is to receive extended time on assignments and tests, sensory breaks as needed, modified assignments and tests, use of graphic organizers, testing in small groups in a separate setting, use of a word processor, and use of visual work systems (visual cards that will cue him as to what to do next, and when the next break is) in all classes.

His teachers do not send home much homework, which helps us, because like most kids with autism, he has a very great antipathy for it. Logically, schoolwork should be done at school, rather than at home, and it just doesn’t make sense to him to have to do work at home. When we do have homework, we break it into chunks that we can do from 15-30 minutes at a time, and then we take a break, sometimes with an incentive (m&ms work wonders), before we get back to work again.

Most of the teachers at his new school get it. They are willing to teach him according to how he learns. They are patient and understanding, and willing to listen to suggestions. We are very lucky, and I am so glad I was able to work so hard to get him placed in this school. It has meant a world of difference to The Boy. He is happier, I think, because he is more understood.

I communicate with his teachers as needed, and never too much. I do not get in their faces when there is an issue. I offer suggestions when they are asked for. I work with my son on his schoolwork and practicing whenever he has it.

My son has special needs. My son has rights. My son has patient and understanding teachers (mostly). My son has me.

Inclusion Depends on Teachers

Posted on January 20, 2014 by simpleijustdo

It’s OK to have high expectations, but your students should always come first

I agree with the idea of inclusion. Any mother of any child with special needs would. Ideally, I would want my child to be in the least restrictive environment, meaning a general education classroom. I would hope that that general ed classroom could meet the needs of every child within. Every parent hopes for that.

But that ideal is rarely found in reality.

This is due to lots of factors, but I can tell you that the number one predictor of a student’s success in the classroom is the teacher. It is a proven fact, and I have enough of my own life experience that tells me it is true.

The ugly truth is that there are teachers who make their rooms an unwelcome place for kids with special needs. And in reality, those teachers are making their rooms unwelcome for any student who struggles. And that means inclusion just can’t happen. When this teacher is the only one who teaches the subject in the school, it means that subject is not accessible to any special needs student in the school (and probably fewer general ed students, as well).

We’re having a meeting with the principal and vice principal, the autism program teacher, and the county autism specialist, and the band teacher on Wednesday. I want my son to have access to the instrumental music program. I fear he has lost interest because he knows this teacher sees him as a “problem” and has made his room unwelcome. I want it on the record that this teacher has allowed this to happen, no, that he has designed his classroom to be unwelcome to students with special needs. I want it noted that he hasn’t provided the accommodations and modifications that are my son’s right, per his IEP. I want everyone there to know that I offered suggestions to alleviate some of the difficulties he is having, and they were ignored.

I want all of this on the table, because it isn’t right that band is virtually inaccessible to special needs student at this school. Even if my own son decides not to continue because of what has happened this year, I want these “exclusive” behaviors exhibited by this teacher to be on the radar of those in charge.

It would be easy to quit, to pull him out of this hostile environment. But we won’t go without a fight. Every child has a right to the curriculum taught in that classroom, and he shouldn’t be allowed to continue his behaviors that exclude any part of the student population.

Band Woes Again

Posted on January 15, 2014 by simpleijustdo

Things are going very well at The Boy’s school. Last week we got a note home that he had placed 2nd in his class in a pyramid game (whatever that was), and had earned a 100% on a social studies test. I reflected that even though he doesn’t have hours of homework a night like he did at his previous school, he still seems to be learning the material – they must be doing things right.

I also got a note from The Boy’s band teacher wondering why he hadn’t been able to play his test for his teacher. I hadn’t known there was a test, and hadn’t even known they had moved on from some small ensemble material they had been playing before and after break. At the time, I explained to his teacher that I was very ill, but could The Boy play it next week, so I could have some time to work on it with him.

And then the poop hit the fan.

We practiced it once on Sunday, the first day I really felt human again. And we took Monday night off (we generally practice every other night or so). Yesterday, I start to get some emails from the band teacher which seemed to suggest The Boy is incapable of playing the test. He got upset with me when I told him we had only practiced the test once. He suggested maybe The Boy should play trumpet, because he’s had other kids with autism have some luck with that instrument…

Here we go again.

I’m disheartened that teachers doing what I used to do seem incapable of thinking outside the box to include students with special needs. They seem not to have a clue that IEPs apply to them, as well. And to have a parent like me as a resource in educating their student, and to almost disregard it…

I’m the one who’s at a loss.

Guest Post: Squirt Guns and Opportunity

Posted on January 8, 2014 by simpleijustdo

Kelsey, who wrote the piece below was first my student when she was in middle school, and then again briefly in high school. I have watched her with her brothers and sisters, and have read some of the things she has posted on her facebook page, and have really kind of watched her grow up into this amazing, funny, incredibly caring individual. Plus she cracks me up. And she’s a really good writer, too. Usually bloggers ask other bloggers to guest post to gain some new readers. I asked Kelsey to guest post because I wanted to share her writing with you. Enjoy. 😉

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When Anna (wow, strange to call my middle school teacher by her first name) asked me to write a little something as a guest on her blog, I thought I didn’t know what to write about. …And then half a second passed by and I knew what I wanted to write about.

All she said was that she knew I had an interest in kids with special needs (I had previously used her as a reference when applying to a camp for children and adults with special needs) and that I could write whatever I wanted… so I did. Here is whatever I wanted:

About a year ago, I began working as a counselor at a summer camp that also provides weekend respites throughout non-summer months. All of the campers who attend these programs have special needs of some sort and their ages can range from 6 to anyone older than 6 who enjoys going to camp. When I explain my job to people, I usually just tell them that I get to play all day with my friends (and then at night, I specialize in getting them to brush their teeth when they don’t want to).

The first thing I thought about writing for this post was a story about this time when I was trying to engage a camper I was pretty familiar with. (We will just call her camper A.) She was pretty young and had come to most respite weekends that I had worked over the past few months, yet the things I learned about her likes and dislikes were limited to the fact that she liked to go for walks and that she quickly grew bored without one-on-one attention.

She wasn’t quite non-verbal, but she didn’t say much, and whenever I asked her a question, her answer was generally just “yeah.” Of course, her “no” was very defined when she was opposed to something, too, so I knew she had to have had some level of comprehension when I spoke to her… I just didn’t know where to place that level.

One day, while I was putting together the beginnings of a puzzle with another camper, I noticed camper A becoming agitated (most likely out of boredom) and beginning to upset other campers as a result. So I brought her over to the puzzle table to join those of us working, fully expecting her to sit and watch. To my surprise, though, she jumped right in and quickly assembled half of the puzzle on her own.

The thing is, you can’t “place that level” anywhere. Those of us who spend time with children (and adults, for that matter) with special needs KNOW that they are capable of more than the world sometimes tells them. Sometimes people who “just don’t get it” can be excruciatingly cruel in excluding them from opportunities because it is assumed that they simply can’t accomplish what “everyone else” can. That’s just hogwash considering everyone has their strengths and weaknesses to begin with, no matter which medical diagnosis you have tacked onto your nametag. But quite honestly, even those of us who know this best can be guilty of the same fault. After seeing what this camper could do, even with a simple puzzle, I realized that I was limiting her in other areas.

Therefore, when we sat down at the waterfront later on and I noticed her happily failing at firing a push-and-pull squirt gun, I didn’t let her continue on like I might have previously. I showed her again and again how to work it properly, part of me wondering if my attempts were futile… and low and behold, they were not. After enough demonstration and reminder, she learned how to properly work the toy and her squeals of delight grew and grew as she did it successfully again and again. It wasn’t that she shouldn’t be allowed to use the toy incorrectly… it was that not trying to teach her because I thought she wouldn’t understand was depriving her of an opportunity. (Of course, I eventually realized the monster I created when she began to soak my previously dry clothing… but that’s not the point.)

Through this job, I have met several young people who know they have what it takes to be successful- they just need some assistance. A lot of them also understand that many people in the world are not willing to give them the time and energy they deserve in order for them to reach their potential. Or rather, they know that this is a pattern… I can’t say that any of them understand it. And neither do I. It has been said time and time again that people who have disabilities can and want to do just as much as anyone else… and this is so, so true. But it’s not enough to parade that idea around on a button pinned to your t-shirt. It has to be actively practiced and enforced, even if you think you’re already doing all you could possibly need to do.

Even after this realization, I still find myself accidentally limiting campers in ways that seem so tiny and insignificant that it couldn’t possibly make a difference. (i.e. buttoning their coats or tying their shoes for them, simply because it’s faster if I do it.) However, I also know that rationalization to be a simple matter of trying to make myself feel better for these slip-ups. The reality of the situation is that even small limitations pile up quickly. It doesn’t matter if someone has been denied the education route they really could benefit from, or simply the chance to put together their own macaroni necklace. So many kids with special needs are told they can’t can’t can’t… and, most commonly, without being told anything at all.

Obviously, the solution to all of this would be for everyone to be perfect, so that helpers always knew how best to provide their help, be they parents, friends, caregivers, teachers, etc. In that case, though, those who needed help would also be perfect, therefore not requiring help in the first place. Maybe perfection isn’t what’s necessary here, though. Maybe a little reminder every now and then, on the other hand, is.

Malice and Cowardice in Anonymity

Posted on January 7, 2014 by simpleijustdo

I just read this article about an anonymous note written to the mom of a child on the spectrum, asking her to stop one of her children from playing and making noise, and stop her other child from staring at people out the window… Eerily similar to the situation several months ago, with another anonymous letter to another mom of an autistic child.

I can only imagine my own emotions if I had received such a letter. And I can imagine what I would want to do about it, immediately, ideas like:

anonymously write down a grievance for every one of my neighbors and tape them to their doors in the middle of the night, just to make sure everyone got a taste of how it feels
Take out a full page ad in the paper with a letter in response, or just a big middle finger
Grabbing a megaphone and walking up and down the street in protest
Taking my son to every house on the street to knock o the door and “meet the neighbors”

None of these, you notice, would be a very rational response. But when you attack a person’s child, rational responses are the last thing you should expect. Mothers can lift cars when their babies are in danger, after all.

What strikes me about stories such as these is the cowardice. Maybe it’s the influence of the anonymity (and animosity) of the internet, but people are too cowardly to attach their name to their grievances, especially when it comes in the form of a personal attack. It’s because they know it is wrong, but they have such a selfish need to make everyone aware of their feelings (as if their feelings have more importance than others), that they have over-ridden socially accepted norms to vent those feelings.

We as parents to special needs kids need to be aware that these feelings exist, although the great majority of the people we encounter are too polite to ever say anything of that kind to us. We need to tap in and feel that undercurrent of ignorance and irritation all around us. We need to know it’s there so that when someone does slip, and they lash out at us in this completely inappropriate, malicious manner, it doesn’t feel like a punch to the gut.

I will never forget how awful an older woman made a four hour train ride for The Boy and me, before he was diagnosed, but not before he was a complete handful. The whole time I was trying to control him, she sat behind us making disapproving noises and shaking her head. I was simultaneously mortified and angry at her almost-silent judgement.

It isn’t right, and it shouldn’t be constantly on our minds. But we need to know it’s there so it doesn’t catch us unawares.

Celebrities and Autism

Posted on January 6, 2014 by simpleijustdo

Jenny McCarthy was all over social media this weekend, because somebody reprinted an old interview, and everyone had something to say about it. I haven’t touched this issue on this blog, and I call it an “issue” because just the mention of Jenny McCarthy divides people in the autism community into very disparate camps. I’ve said before that I think this kind of division can not only hurt our kids, but also any progress we are making in enlightening society, and changing the world for our kiddos.

And truthfully, celebrities can say whatever they choose, not because it’s a first amendment right (because that is not what the first amendment is actually about), but because media and all of society expect them to have something to say on everything, and even if they don’t seek it out (although I’m pretty sure Ms. McCarthy did), sometimes they are pushed to voice their opinions.

Of course, when you do voice your opinions, one must understand that others may disagree with you. And because you are a celebrity, and therefore so removed from real life, they may do so in a less than charming fashion. Even founders of large nonprofits are not immune… ahem…

I’m going to tell you right now that I have not read Jenny’s books (does she have more than one?), nor have I read any entire interviews. I know that she claims to have had her words misconstrued, and misreported. I have heard that she claimed her son had been “cured” of autism, and that now he may have not had autism at all. I have heard that her book contained some outlandish theories about children with autism, something having to do with crystals… (??)… As I said, I haven’t read it. But I’m beginning to think I should.

I will tell you that I believe in science. I believe in the many, many, many scientific studies that have repeatedly found no link between autism and vaccines, regardless of the schedule. I believe that anyone urging parents to forgo vaccines for their children is dangerous to society*, and I believe the CDC, the WHO, and the NIH.

(*Vaccines protect those who cannot be vaccinated, but only if all who can, do: from the CDC website, “Immunizing individual children also helps to protect the health of our community, especially those people who cannot be immunized. These include children who are too young to be vaccinated (for example, children less than a year old cannot receive the measles vaccine but can be infected by the measles virus), those who cannot be vaccinated for medical reasons (for example, children with leukemia), and those who cannot make an adequate response to vaccination.”)

Autism has no cure. It is a neurological disorder, not a disease, and not an epidemic. It is not something from which you “recover”.

Autism is my son, and my son is autism. I cannot separate them, nor would I want to. Many adults with autism feel this same way, and they are much more entitled to be experts in our community than anyone else.

I believe we need to be more careful to whom we give credence.

I believe we shouldn’t allow anyone to divide us as a community.

I believe we need to understand and support good science rather than anecdotal evidence.

I believe that we should be suspicious of anyone making money off of autism.

Custom Built Bed for my Hypo-sensitive Boy

Posted on December 26, 2013 by simpleijustdo

The Boy is often hypo-sensitive, meaning he needs more sensory input than is typical. He rubs his shoulder on the wall as he walks down the hall, loves big hugs, and could spend all day in the water if we let him. He needs that extra input on his skin to be able to tell where it ends. Part of this is that he likes to be under blankets, and in enclosed spaces, as many on the spectrum do, and has taken to hanging out in his closet to achieve the desired effect. No problem except that he is getting bigger every day, and his closet is not.

I mentioned the other day that The Man had designed and was custom-building a bed modeled after the Captain’s bed style, so that The Boy could have an enclosed space under it in which to hang out. Here is the (semi-) final result:

I say “semi” because, as you can see, the shutter door has yet to be attached on the end. The Boy chose the color, and would like the door to be painted the same color, but alas, it is made of plastic, requiring special paint, and well, there’s only so much time in the day. Some of you IKEA fans, may recognize the dark long piece with drawers that acts as a step and added storage that can be accessed from both underneath and the front of the bed. It is from the Expedit line, and we used it for sorting the recycling at our old house. It provides much needed additional storage in The Boy’s new room design. We got rid of the box spring, and his mattress sits on top of slats, allowing for extra head room underneath.

The best part is that The Boy loves it. It really is nice to have a husband that fulfills his promises and is incredibly handy.

Sad to Lose My Bright Spot

Posted on December 23, 2013 by simpleijustdo

My little kindergartener’s mom called today to say she won’t be coming back to me for tutoring. She’s not verbal in the same way The Boy is not verbal, and her mom said she didn’t really know me, and you couldn’t be too careful, when she can’t tell her parents about anything that happens to her.

I get it. Believe me, I do.

But I can’t deny that it hurts, and it makes me sad.

Once, when I was still doing my teacher thing, I was accused by a parent of putting my students in danger of heatstroke by having them march in a parade in 80 degree weather. I’ve been called a lot of things over the span of my career, but that one really, really hurt. That someone would think that I would ever harm one of my students was so wrong, such an unwarranted injustice to me… Needless to say, it stayed with me.

As does this. I looked forward to working with her, because I saw so much of my son in her, and she was a joy, a JOY, to work with. I wish her well, and hope she gets every support she needs to become as independent as she can possibly be. I hope she is able to advocate for herself someday.

Teaching can break your heart sometimes.

Is it Time to Call a Spade a Spade?

Posted on December 19, 2013 by simpleijustdo

I described the ex’s latest cancellation the other day, and The Boy’s reaction. I am always the one who has to relay the news to The Boy, and I am the one left to field questions to which I have no answers. I am the one to deal with the acting out that quite often happens after one of these cancellations.

The ex will never change, but does that mean I shouldn’t try to show him what he’s missing, and what he is doing to our son?

English: : A mirror, reflecting a vase. Españo...

Time to hold up a mirror so he can self-reflect?…

I’m thinking of sending him a text (he doesn’t even access his email, and I don’t want to get into it with him on the phone) to point out that he hasn’t seen his son in eight months, and to ask him to imagine not having his own dad around for that long a time period. Explain that I understand money is tight, and that he has a hard time taking work off, but that if he saved a bit out of every paycheck, and told his boss months in advance (instead of days), he might be able to swing it. Ask him to stop “trying” to make plans and only tell The Boy he will see him when he is sure he can. Point out that his son is sad and angry at him, and that he deals with this by acting out, often at school.

He will undoubtedly get angry and not speak to The Boy for months after I send it, because that is his MO. But I feel I have the right to ask someone who continually hurts my son to take a moment to realize he is doing it, and to please stop.

I know he won’t change, but there’s a chance he has simply not given a thought to the effect of his absence and broken promises on his son. And if there’s a chance, it’s worth trying, right?

Some Autism Lessons in ‘Frozen’

Posted on December 16, 2013 by simpleijustdo

Yesterday, I took The Boy and one of his buddies to see the latest Disney movie, “Frozen.” (***SPOILER ALERT: If you haven’t seen it yet, this post does contain spoilers, so come back and read after you’ve seen it***) While I watched, and endured the entire row of middle school girls who decided to sit behind us (*gag*), I realized Elsa was going through very similar experiences to many kids on the spectrum.

She wanted to be around people, and to be close to her sister, but knew they wouldn’t understand, and didn’t want to hurt anyone.
When she finally allowed her emotion to show, there were some people who actually were hurt (more than once), because she couldn’t control it.
When she was able to get away from the castle (and other people), she was able to see how beautifully her powers could transform her surroundings.
Through her sister’s love, she was able to realize how to use her powers for good.

And I thought what a great message this movie had, and how powerful for our kids on the spectrum to see it, and possibly identify with the “bad girl” who wasn’t really bad, just misunderstood. Evolved fairy tales are my favorite. Girls who save boys, people who solve problems using minds not weapons, and the replacement of an “evil ice queen” with a young misunderstood girl with special powers both dangerous and beautiful. Yep, this is the kind of fairy tale I want The Boy to experience.